tmj due to head injury

Hello all
2 years ago i fell and landed on my left ear on my own icy driveway. ever since i ave been diagnosed with post concussive syndrome, post traumatic vision syndrome, etc...........had balance and vestibular therapy for months and got worse instead of better. was now, 2 years later, diagnosed with bilateral tmj. I actually fell on my tmj joint and never knew it! Ear doctors, neurologists, orthopedic never figured it out. MY symptons are:
fulness in both ears, pain in and around both ears, feels as if liquid is there. severe muscle stiffness in head, face, neck, back and chest that has been getting worse throughout the second year. difficulty swallowint, feeling like my throat is squeezed or foreign object is stuck in there. Balance problems, dizziness, headpain, eye pain, pins, needles and tingling, twitching sensations in my scalp, face, pain in arms and hands and weakness. Some days I feel dizzy, some days lightheaded and weak. it's actually more difficult to smile or laugh than to chew, because my face muscles feel so stiff. i also have a series of visual l problems thaat have been diagnosed as NO depht perception, nystagmus, seeing the image vibrate and move all the time, and problems therein. Is anyone here a victim of tmj due to head trauma? I wish to know if any of you has as many problems as I have. Also, any of you experience debilitating muscle stiffness in chest, back, shoulderblades and especiallyy neck causing difficulty swallowing? I take muscle relaxants but they don't always work. I have tried chiropractic and he made me much worse because i have severe sensitivity to touch and he actually manipulated my neck and head once and I have not recovered yet as of almost a year since, that was when the muscle stifness got worse. i had physical therapy for 5 monts, the muscles were getting better and looser, but then it all came back. my maxillloffacial surgeonn tells me that tmj due to joint injury spreads down the neuromuscular system after going untreated for two years. any of you had this experience?
i would love to hear something back. i don't know anyone who has gone through anything like this.
tomorrow I get my soft and hard appliances to start wearing on my lower teeth. he also wants me to get physical thereapy for tmj, what is it like? any of you had this kind of physical therapy? I had an evaluation with a therapist last week but he touched my back lightly and my throat got a lot worse. i dont know what to do if I can't be touched. i cant even get ultrasound!!
please help!!
gypsy

I have been a grinder all my life (34 years) and was involved in a car accident where I was moving when the crazy lady hit the driver side of my car three times at 45 mph so my seat belt did not lock and my face went through the windshield then the seat belt jerked be back three different times until I busted the driver side window out with my thick head, I had spinal shock for 48 hours and was checked from head to toe but NOTHING was ever said about my jaws. Everything was about my spinal shock and if I would get the feeling back from my neck down. And about twelve - thirteen months and one baby after my accident I began having "ear aches,” I drove my family doctor crazy, we had an in ground pool so I blamed it on being in the water all the time etc. The Wonderful, Excellent OS that I have now was able to get copies of the scans that had been done while I was in the hospital from my car accident and I could even pick out my left disc was out of place on them. Thanks to the idiot who read my scan I went almost three years without proper treatment for my TMJ until I got sent to an unprofessional OS that crushed my left disc while trying to force my mouth open. He swore I could open my mouth wider so when he put me to sleep to remove my wisdom teeth (I did not have TMJ according to him) he forced my mouth open and trashed my left joint. Ever since my TMJ really began to show itself I have had bad problems with the muscles in my upper back, neck and shoulders. Not really spasms but more like 50 million really sharp pins sticking me so that no matter how I move it only hurts worse so I want to find a position that I can breathe in and then not move at all. I was able to find a chiro in the next town over who specialized in TMJ and he has been so wonderful when I can stand to go. I know what you are describing about the fluid in your ears and the pain. I try to explain to my family doctor that I feel like a 6'5 person has picked me up by my ears and shook me, I am always touching the inside of my ear because it feels like liquid is running out of it and nothing is there. I have a sensation that my scalp and the side of my face is crawling and have now been able to realize that when I feel that I am beginning to swell. You are not alone on this ride and you can get a lot of support and understanding on this board.
Take Care.
Shirlett

DEAR SHIRLETT
THANKS FOR SHARING YOUR STORY. IT SOUNDS LIKE YOU TOO HAVE BEEN THROUGH SOME ROUGH TIMES. I AM SORRY.
I HAD A CHIRO ABOUR A YEAR AND A HALF AGO WHO SEEMED LIKE HE WAS HELPING ME AT FIRST, BUT THEN, HE DECIDED TO DO SOME MORE AGRESSIVE MANIPULATIONS ON MY NECK AND HEAD, (NO ONE KNEW I HAD TMJ THEN) and basically for unknown reasons i haven't recovered. my neck is still stiff as a rock most days, it has traveled down to my back, even my legs give out at times and feel shaky. my head and ace stiffness increased so much after that that my husband and I (now that we know i have tmj) think that the chiro must have misaligned my jaw even further when he manipulated me.
yesterday i went to get my first set o appliances, one sot and one hard from my maxillofacial. so this is my second day wearing these bulky materials in my mouth. i do hope it makes the unbearable weight in my head, face, and top of neck go away, or decrease at least.
my family doctor , after i told him of my feelings in my ear, he actually took a little stuped light and looked in there and said to me it all looked normal in there!!!!!!!!!!!!! yeah, the medical system is amuzing, and is not aware of any of this. I have had several mri and cat scans of my head since my injury and no one ever say my tmj's were displaced. it is amuzing.
do you still have symptons from your spinal shock? can you describe to me what that feels like? i am still trying to figure out what is going on with my back that keeps getting worse, i get episodes of cold chills and shakes that no one understands.
i wish you good luck
gypsy

No I no longer have any symptoms from the spinal shock even tho some days I wish I did then there would be less pain in my body. Have you had an MRI or CT Scan of your TM's? If not you might want to ask that your doctor order either test ONLY for your TM's open and closed mouth to see where your disc's are. Have you seen an Oral Surgeon who specialty is TMJ? Other than taking muscle relaxers very hot baths (as hot as you can stand it) are the only two things that help me sleep with the exception of my Ambien nights! At least with the Ambien where I am laying when the pill kicks in is where I am laying when I wake up. I have also been diagnosed with Fibromyalgia so most of my body pain comes from that. I hope you get some relief.
Shirlett

two days ago i went to get my hard and soft splints. My maxillofacial surgeon did order also mri of tmj open and closed. it's only been two days i am wearing these splints, however, i swear the pain on my right ear gets way worse, and while eating and talking, etc..... did you wear splints? did they make you feel worse before they could help you?
my maxillofacial surgeon thinks i have to go see a doctor for fybromylagia. I don't have too much pain all over my body, there are those days when I am sore all over, but it's more STIFFNESS, severe stiffness. I'll get a emg and nerve conduction test on monday to see if it's neurological, and i was diagnozed with RSD in my neck. i get a lot of pins, needles, tingling, spams, twitching all over my body, down to my feet actually, but more so on my upper body especially in my head, face, arms and hands.
i am new to this forum and i can see that i am not alone, you guys are suffering too.
my heart goes out to all of you.
take care

I do not have pain all over my body which is why I had a hard time accepting the Fibromyalgia issue. I really only hurt in my hips, knees, ankels and my feet. My knees and hip(s) get stiff and I cannot walk and if I force it then the pain really kicks in, thats why I thought it was something else other than the Fibromyalgia. Did they put you on a liquid or soft diet? I know when I am hurting during a flare up I go to liquids and it helps me to not add any extra stress on my face. But no liquids through a straw. If I cannot drink it I cannot have it. I do remember it did seem like I had MORE pain after I started wearing the splint 24/7 and I could only take it out to eat and brush my teeth and I complained to the DX and he told me it was because things were being put where they should be and that was causing me the added pain. I feel for you because I have been there. Just hang in there. It seems you are on the right road.
Shirlett

thank you for your response. I don[t recall if I shared this but I was also diagnozed with RSD. Because you mentioned your pain is not in your whole body, and you wondered about the fibromyalgia, both rsd and fibromyalgia from what my doctors say are auto imune neuromuscular diseases. look into that. have you tried some sort of physical therapy for what they are callling fibromyalgia? I was in physical thereapy for 5 months for my rsd in my neck, back, arms, and chest, and was getting a lot better but once they had me lift weights I spiralled downhill really fast. Now the symptons have spread down to my hips, legs and feel. Feelings of weakenss, soreness, stiffness. And now they are wondering if I may have fibromyaliga. So, I will start a new program of physical therapy next week that apparently will consist of more stretching and lightweight stuff, and also for the TMJ.
I wonder if a specific kind of physical therapy might be helpful to you, prescribed by either a physiatrist, or an orthoepaedic.... I also heard of doing light stretches inside a very warm pool being very helpful for muscle stiffness and soreness, to retrain the neuromuscular system. i am sharing what I have been learning with you in the hope it might be helpful in some way.
take care and thank you for sharing
gypsy